Article title in full:

Year of first publication:

2007

Disclaimer:

This article represents the views of its author and does not represent Organisation Intersex International policy nor that of its affiliates. The views of the authors may well have changed since this article was written.

Dear Drs. Hughes, Nihoul-Fékété, Thomas and Cohen-Kettenis,

Prof. M. Italiano and I are writing on behalf of the Organisation Intersex International, a Canadian organisation which has become the largest intersex organisation in the world with a membership including people from every continent (except Antarctica) and with almost all known intersex variations, because we feel it necessary to respond to a recent article by Hughes et al.1

In an effort to legitimize the change of the term “intersex” to that of “Disorders of Sex Development” (DSD), Hughes et al1. in their arguments in favour of embracing the new terminology, mistakenly claim (pg. 359), that “Transsexualism and intersex are no longer so easily confused”1. Theirs is an erroneous claim, due to the fact that whereas the diagnosis of transsexualism (gender identity disorder) was a separate diagnosis from gender identity issues, which were associated with intersex (but not DSD), the replacement of “intersex” by “DSD” now includes far more conditions under the new nomenclature of DSD, which will add to the confusion between DSD (which is now “expanded” intersex) and transsexualism. The confusion stems from the fact that intersex never included many conditions which are now being included under the term DSD, and that the inclusion of these extra conditions, will actually confuse those who try to differentiate between what the authors claim as intersex (but now is DSD) and transsexualism. For example, in the article by Hughes et al1, congenital hypogonadotropic hypogonadism, cryptorchidism, isolated hypospadias, cloacal anomalies, and labial adhesions (pg. 355, Table 2) are all now classified as a DSD.

Thus, it is not known if persons presenting with these conditions and gender dysphoria/rejection of a gender assignment, will be labelled as transsexual (gender identity disorder/GID), or excluded from this diagnosis based upon having a DSD. Individuals who have an intersex variation and who wish to transition from the assigned gender are classified in the Diagnostic and Statistical Manual of Mental Disorders (DSM) as having a gender identity disorder not otherwise specified (GIDNOS). Since our membership comes from so many different countries with many living in economic conditions different from upper middle class Americans, this has serious implications for them, especially in countries which have nationalised health care systems or where access to medical care is limited for people living with intersex variations. OII has received e-mails from many people who because of having an intersex variation (and therefore being in the GIDNOS category) find it almost impossible to get approval to transition from their imposed gender, or to get their national health care system to pay for it. This limits treatment options also for intersex people in countries with limited access to medical care. For example, even if the person identifies as male, and needs help with hormones to present as male, they will sometimes only be given access to estrogens, etc., in accord with the original gender assignment, because the GIDNOS classification (which does affect health care decisions in many countries around the world) puts them in the same category as people who have a preoccupation with penectomy or castration only, which means that health care providers are less likely to take the request to transition seriously. Those who are diagnosed as having GID (being transsexuals) do not encounter the same difficulties.

Let me clarify the current dilemma faced by people with intersex variations, in order to explain why the DSD terminology will put many people who are currently considered to be transsexual at an equal disadvantage. In the DSM, one is excluded from a transsexual (GID) diagnosis, if one has an intersex variation. If they present with such, they receive a diagnosis of GIDNOS. However, if all the conditions which were not formerly intersexed conditions, but now are a DSD, exclude a diagnosis of GID, then many more persons will be put in the category of GIDNOS. They will find themselves in a category which includes those diagnosed with a preoccupation with castration or penectomy only2, in a category which denies them treatment as transsexuals3, and which potentially labels them as having a disability4. In many jurisdictions, unlike those with intersex who receive a diagnosis of GIDNOS, a transsexual diagnosis (GID diagnosis) is exclusionary for disability recognition4. Furthermore, should transsexualism (GID) be removed from the DSM, persons with a DSD, will be the only individuals who present with gender dysphoria, who will remain in a book classifying mental disorders.

Thus the reclassification from intersex to DSD is far more confusing with transsexualism, because research has shown that many transsexuals have a DSD (such as congenital hypogonadism)56, whereas they would not have been considered as having an intersex variation in the way that term had been previously used in the DSM.

4. EEOC charge of discrimination by Curtis E. Hinkle against his employer, the Spartanburg County Library, Charge No: 140A01849, filed August 1, 2000. Right to sue letter from the EEOC July 1, 2001 under the Americans with Disabilities Act. (Intersex was determined to be covered by the Americans with Disabilities Act, whereas transsexuality was not included).